OT July Chit Chat

[stillstANNding]

Virginia,

Have you checked the Chronic Disease Fund? Works similar to PAN. It has money sometimes.

Program currently includes Avonex, Betaseron, Copaxone, Rebif, and Tysabri.

Chronic Disease Fund

6900 N. Dallas Parkway, Suite 200, Plano, TX 75024

Phone: (877) 968-7233 or (972) 608-7141

Email: info@cdfund.org
Program website: Only registered and activated users can see links., Click Here To Register...

ANN

[Virginia]

Ann, thanks so much for recommending this site. Unfortunately, the multiple sclerosis fund is not open for enrollment. Maybe at some other time. I did not go through the rest of it to see if I would qualify for this one. Maybe, but I don't know. Will have to wait until the MS fund is accepting new enrollees.

[Virginia]

I have a walk-in attic and over a period of years a lot of stuff that I couldn't put in the trash just simply built up, plus Christmas decorations, empty boxes and small appliances that would break and I had no where to get rid of them. So, I had asked the lady who helps me if she knew of anyone who would come with a truck and a shop vac and clean the attic. She said her nieces husband would come with her and do it. They came today and he brought his ladder and changed 5 ceiling lights for me. Some had two bulbs and maybe one was burned out. Laura has come to realize how bad these things bother me. He also put in new refrigerator water filter. It is at the bottom of refrigerator and I can't do it. As he changed the bulbs Laura cleaned the fixtures for me.

When they finished the started on the attic and there was more small stuff than I realized. They worked steady with just one small break when I got them ice water. They were here about 3 to 3 1/2 hours. I asked how much they wanted for work like that and they both said they had not done anything like that before. The man said to give him the same thing that I gave Laura. We finally decided on $300.00 each. While I am sure they would easily taken $250.00 each, I did not want to take advantage of either of them. Does this sound about right? I really have no idea if I gave them enough or not, but $600.00 to clean the attic is how I was thinking. Bothers me when I am unsure of something like this.

[stillstANNding]

You gave them about $100 an hour each! Much too high for unskilled labor even if you are being generous.

Fifteen to twenty dollars an hour plus tip would work here. Certainly not more than $30 an hour. You should set the pay before you have the work done. You tell prospective workers, “I pay twenty dollars an hour” or whatever you have decided.

ANN

[Virginia]

Thanks Ann for helping me. I felt I was on the high side, however they were not slack at all. They really did work. If Laura worked that hard when she comes to clean I would really be happy. Of course I don't pay her that much per hour when she cleans. As they worked I was thinking more like $50.00 per hour for each of them and that is what I should have stuck to in my mind because I think they would have been very satisfied. I just have such a hard time getting anyone to do these type things that I am just so grateful when I do. Anyone I got from Angie's List or any places like that would probably have been extremely expensive and I can trust Laura in the house. So anyway I have to learn these things and learn to trust my instincts about such things. I think $50 an hr would have been good.

[stillstANNding]

My house cleaner originally charged $55 to clean my first floor: kitchen, full bath, living room and dining room. This includes washing floors and vacuuming LR rug. Also, cleaning the fridge and glass front door and kitchen window.

Originally, it was just her but now she brings someone with her. It takes about an hour and a half. We now pay $75. That includes a raise we thought she deserved.

ANN

[Virginia]

On that one Ann you are paying a little more than I do per hour, however most of the time my house cleaner doesn't do quite as much. I do try to help her out with a little extra when Holidays come up or she does something more than usual or I happen to know that she just got her citizenship. Then I recognized the work she had done to do that and I rewarded her for that. Overall I am pretty fair on the weekly stuff. I know that if I had a service come in they would want to do more and charge more and she is willing to come to me when she gets through with one of the other houses that she does in this neighborhood. She works 4 hours for them and 2 for me. (of course with the exception of when she doesn't show up) I am hoping that she has gotten the message that she needs to call when she isn't going to come.

[Catdancer]

I pay my cleaner $20 an hour or part of an hour....which is $5 an hour more than others pay her. On those occasions when she brings someone to help her, they get the same. Professional services around here charge $20 an hour for routine cleaning -- but the actual worker only gets $12 of that. Anything not "routine" costs more.

My cleaner will do whatever I ask of her, and take away trash. She has even taken down curtains, had them laundered or cleaned, brought them back, hung them. I pay the estimated hours that takes, plus extra for supplies.

All of this is a cash transaction. I don't ask whether she pays taxes on it ....probably doesnt....And I don't declare it anywhere.

I think for something like the cleaning of the attic I might have paid $30 -$35/ hour, but not beyond.

[agate]

I think it's unusual for a household cleaner to be willing to take down curtains. I checked into this a while back and couldn't find anyone. I ended up contacting a professional curtain cleaning person and paid $100 but he took them down, brought them back nicely cleaned, and hung them up beautifully. However, $100 seemed high for just two sets of ordinary curtains.

[Catdancer]

I think it's unusual for a household cleaner to be willing to take down curtains. I checked into this a while back and couldn't find anyone. I ended up contacting a professional curtain cleaning person and paid $100 but he took them down, brought them back nicely cleaned, and hung them up beautifully. However, $100 seemed high for just two sets of ordinary curtains.

These weren't ordinary -- all three sets were floor to ceiling, and span picture windows. She took them down, washed them (in commercial washing machines), dried them, ironed them, then brought them back and hung them. I paid her $150, which she claimed "more than paid for" her work.

You mentioned that you do something extra for holidays. I do that as well, usually around $100 - $150, which covers the 2 times a month she ordinarily works for me. I've also given her stuff: I'll have clothing, or kitchen wares, or books, other things that I'm sending to a thrift shop -- and tell her that if she takes it for me, she is free to take any of it for herself or her family (she has several (adult) kids, and a bunch of grandkids). I know she's "claimed" quite a few of the things, and some of it she's re-sold, I don't care -- I don't want it, don't want to be bothered to try to sell it myself; if she can, good for her!

[Virginia]

Cat, I know what you mean about giving things away. I have given my housekeeper area rugs, arrangements, really nice Christmas decorations, a lighted Christmas tree that sits on the porch which had hardly been used. I couldn't get it up and down the steps to put it out and when I got someone to do it for me I had to go out and plug and unplug it. I could get down to do it, but couldn't get back up. I really don't even know all the stuff I have given her including tons of clothes that she could take to her church since she could not wear them. But still I feel that is as much for me as her because it gets rid of things that I can no longer use, so I don't consider it part of her pay and I am sure you do not either.

[Howie]

Good Morning all!

I made a bank and store run. I'm getting so good at shopping, I didn't even use the money I got at the bank. And I've got enough food to last me the rest of the month, probably longer.

Sam got to go outside while I carried everything in, and put it away. Then I go to the door, and rattle the storm door handle, and she comes running in. I like that.

It's not too hot today, but the heat is on the way, 90's and maybe a 100 degree day before it's over. It hit 94 yesterday.

Everyone have a great day, and stay cool!

[Cherie]

Took David back to the Memory and Aging doc today. His PET scan showed that right temporal lobe is less functional than any other part of the brain. That, combined with low scores on executive function, qualifies him to apply for a trial of new early Alzheimer's therapies. Three arms of the trial...1) infusion to break up and eliminate Amyloid plaques and an oral medication to facilitate that. 2) Infusion as previously described and an oral placebo daily. 3.) Placebo infusion AND placebo oral daily. The trial goes for 18 months with infusions every 4 weeks. It takes us an hour to drive up and an hour to drive back and the first infusion visit would be three hours. The others would be 1.5-2 hours every 4 weeks for 18 months. I need to be there at all but 4 of the visits and possibly for all of them. David has a 34% chance of being in a totally placebo arm of the trial for 20 visits of that time. It takes two more PET scans (one for Amyloid deposits and one for tau deposits as well as multiple baseline blood tests and memory testing on a tablet (Lilly is running the study) so it repeats work that has already been done but cannot use what we have already contributed.

If the results are what are hoped for, there will be a 6 month extension trial applied for while awaiting FDA approval of the medication (s) during which time all participants can be on active drug. After that , it will be up to insurance companies if they will allow participants to stay on drug if they notice improvement.

I, personally, am happy to commit to whatever time is needed to help him feel like he is taking control and getting help and he is willing to be a study participant but is not at all happy about the placebo arm of the study and already sees himself being assigned to it. Really testy today!

[agate]

Cherie, it takes courage to sign up for that trial, I'm sure. I hope he won't turn out to be in the placebo arm--and will see some benefit from the therapy. Anyone concerned about Alzheimer's for any reason will be grateful to people like him who are willing to be in a trial.

Yesterday it was 100', today "only" 95' but I had to go to a doctor's appointment--the doctor's appointment I tried twice before to have but the clinic goofed up. Now at last my regular doctor was back, and I was certainly glad to see her.

She was able to sign off on my need for diabetic shoes due to peripheral artery disease, bunions, calluses, and peripheral neuropathy. My BP was 118/70 and BMI was 24.

I felt as if I'd been released from prison by venturing out today at all. In previous years I wouldn't have scheduled appointments in summer or would have cancelled when it was this hot.

I really had to keep this appointment, and besides they were testing fire alarms in this building all day today--which is so noisy that many people plan to leave until it's over.

I had found out a while back that all of the paratransit vans are now air conditioned, and that made all the difference for me. In the past some had AC and some didn't, and I'm wiped out if I have to be on a stuffy van for an hour or two. So I rode around in air conditioned comfort, and had a long ride over there because another rider had to be dropped off, but I really enjoyed watching the world go by from inside that cool van.

I discussed the AC situation with one of the drivers and was told that sometimes a van's AC breaks down. That is always a possibility but at least the chances are good now that any van I take will have AC.

Good to know because there are a couple of other unavoidable appointments this summer--eye doctor, probably the optician, the diabetic shoes, and the dentist--with the hearing aids coming along in Sept.

Oh yes--only about a block from where I live I saw an unusual sight: a yard with several rows of CORN growing. About 5 rows, and it was about 3 feet high. Not something you see every day around here!

[Howie]

Cherie, I'm hoping that David gets the real med during the trial, but either way, it is a brave decision to even enter the trial. My mother had Alzheimer's, so I know how it usually unfolds. There was a med she took that was about all that was available at that time, but it really made no difference. Keeping you both in my thoughts.